What to Expect When There are No Expectations.

What to expect when their are no expectations?

 

Mayhem and pissed off parents. Let’s explore, shall we?

 

One of the most infuriating conversations that I have had with providers is that because my child has mental health diagnoses, that doesn’t make him incapable of living life and being a contributing member of society. Now this conversation isn’t typically stated as expressly as I am saying it. It’s more in the indirect suggestions or decisions:

  • Low expectations and benchmarks on IEPs (Individualized Education Plans);

  • “Creative ideas” like using a sticker charts for teenagers to remember to brush his teeth;

  • Expecting that as parents we should reserve ourselves to the notion that our child just may not be able to empty the dishwasher or perform other trivial tasks.

(As an aside, there are obviously kids that cannot complete these tasks for their own specific reasons. Those families have different challenges and every family should be treated individually and with respect..)

 

As a parent, friend, and/or practitioner with lived experience of raising a child with high needs, I have rarely come across a family who thinks their child shouldn’t be held to some type of standard of living independently or gaining those skills, depending on their age. As parents, we have already given up the dreams we had when our children were in utero. We know that their lives will be more difficult than their typically-developing peers. We have cried the tears in public and in private as we have grieved for them and for ourselves.

 

 

 

Would we give up on a child with a physical disability? I watch foundations, families and providers come together to support those with physical disabilities. I have watched television shows renovate homes to make sure a child that is wheelchair-bound can get into every room in their home. THIS IS A BLESSING. This is how life should be for all people of all abilities. As a community of families raising children with mental health needs, this is often not our story.

 

Enter the mayhem and pissed off parents.I would phrase that differently, except, it's quite accurate.

 

Here’s an example of how the spiral happens:

 

 

1- Family asks professional what their recommendations are for a child that is having trouble sticking to a routine, which spirals into the child not coming out of their bedroom due to depression and frustration.

 

2- Provider gives some suggestions of techniques and services.

 

3- Family attempts the things they think will be successful. Some work, some don’t. Overall, the problem stays the same.

 

4- Parent goes back for advice.

 

5- Provider suggests parent tries the things they haven’t.

 

6- Parent reluctantly tries. Its doesn’t work. Parent is now frustrated. Their child eats dinner in her room every night and lives in filth. Their child has no friends. Months are passing by.

 

7- Family asks provider what to do. How can they help their child?

 

8- Provider makes suggestion to retry something that already failed, or suggests a hospitalization or maybe even residential. ‘Parents can’t be expected to deal with this. This is probably just their baseline. You should expect that this is the best they may be able to do.’ (This is where the condescending tone starts and where it gets bad.)

 

9- Family gets pissed. They are offended, sad, lost. Their child is unhappy and not thriving. Time is passing. Emails start hurling. Parents contact people in higher positions to help. Now everyone is mad.

 

This gets worse, but I’ll spare the details of anguish, anger and fear. The point is it's unnecessary.

 

We, as a collective, must be holders of hope for these beautiful children. Families don’t want to fight anymore than we already are. We want our children’s providers to be our comrades- the people who have seen success and show us how to get there. We know people are in helping fields to help and not just to make money. (It’s social services. We know y'all aren’t rolling in the dough in these jobs.)

 

So how do we get out of this vicious cycle?

 

Communication. Respect. Love.

 

 

 

It’s correct as parents we didn’t see this coming. We are adjusting everyday. Professionals chose this. We know you are educated differently than we are. We have been thrown in with only our own devices. But the combination of a family’s vast knowledge of their child and a professional’s expertise from working in the field is a powerful combination. It can be hard to find that middle ground. It can be hard to find common expectations, or goals, to work towards and figure out a way to get there together.

 

So, we need to know there are expectations. That people haven’t given up on our kids, our families, our lives. We are willing to strive and struggle to make the impossible possible. We want to show our kids how to try and succeed as well as try and lose. We want opportunities for our kids to learn from their mistakes. They can’t do that without expectations. They are still kids, adolescents, young adults. They are not their diagnoses. They are not their behaviors.

 

They need something to strive for.

 

Don’t give up on us, on them.

 

They are champions.

 

 

 

Kristi Glenn is Co-Founder of Pinnacle Partnerships and a professional with lived experience of raising her own child with emotional health needs. She has worked in government, community, and direct service to support family driven care and advocate for family voice at the highest levels.

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